My 9.5 month battle with a rare neurological disorder called "Guillain-Barre Syndrome"
Is there anybody in there?
Just nod if you can hear me.
Is there anyone home?
Come on, now.
I hear you’re feeling down.
Well I can ease your pain,
Get you on your feet again.
I need some information first.
Just the basic facts:
Can you show me where it hurts?
There is no pain, you are receding.
A distant ships smoke on the horizon.
You are only coming through in waves.
Your lips move but I can’t hear what you’re sayin.
When I was a child I had a fever.
My hands felt just like two balloons.
Now I got that feeling once again.
I can’t explain, you would not understand.
This is not how I am.
I have become comfortably numb.
Just a little pinprick. [ping]
There’ll be no more --aaaaaahhhhh!
But you may feel a little sick.
Can you stand up?
I do believe its working. good.
That’ll keep you going for the show.
Come on its time to go.
There is no pain, you are receding.
A distant ships smoke on the horizon.
You are only coming through in waves.
Your lips move but I can’t hear what you’re sayin.
When I was a child I caught a fleeting glimpse,
Out of the corner of my eye.
I turned to look but it was gone.
I cannot put my finger on it now.
The child is grown, the dream is gone.
I have become comfortably numb.
– “Comfortably Numb” by Pink Floyd
Guillain-Barre Syndrome 1984-1985 (or “Please Straighten My Leg”)
July 14, 1984, the summer between my junior and senior years in high school, I woke up in the morning and the middle toe on my left foot was numb, like pins-and-needles. I had a deep sense of foreboding. This had never happened to me before. Throughout the course of the day, the pins-and-needles numbness spread to my hands and feet. We went to see my doctor. He had no idea what was happening to me. My parents called Children’s Memorial Hospital in Chicago, IL. My parents were told that if this became any worse, rush me to Children’s Memorial Hospital. I tried playing my drum set, but I kept dropping the drum sticks. I took a nap. I woke around 3:00 PM. I could not walk. My right leg kept giving out under me. I tried to eat, but I could not swallow. After I crawled to my bedroom to pick out the perfect Grateful Dead bootleg tape to listen to on the ride to the hospital, my parents helped me into the car. We made it as fast as we could, in rush hour traffic, to Children’s Memorial Hospital. Some of Children’s Memorial Hospital’s doctors and nurses were waiting for me with a wheelchair. I was rushed off. I assumed whatever I had contracted would require surgery or some strong medicine. I assumed that I would be out of the hospital, and I would be enjoying the rest of my summer break from school in about a week.
As soon as the doctors got me on a gurney, a urinary catheter was inserted. The doctors did not tell me what they were going to do, and I screamed in pain. I thought they had cut off my favorite part of my body (and we had just become friends). They had inserted a tube in my penis to drain my bladder. The catheter would remain in me for two months.
I was heavily sedated: an unpleasant feeling complete with hallucinations, paranoia and being semiconscious but very out of touch with reality. There was no separation between dreaming and waking reality. My perceptions of the first week were very frightening and troubling. I was convinced that the doctors were trying to kill me: a fear that would linger for at least a month. They performed a spinal tap on me and stuck IV needles wherever they could find a good vein. Based on their observations and tests, I had a rare neurological disorder called, “Guillain-Barre Syndrome.” The odds of getting this syndrome are about one in fifty thousand, and I had the worst case that they had ever seen at Children’s Memorial Hospital. (And I never win anything!) From the time I woke up with numbness in one toe until the time that I was completely paralyzed and on a respirator was less than 18 hours! The doctors told my parents that they should call their clergy. It appeared that I would not live through the night.
The first week, or what I believed to be a week, was out of a horror movie written by Hitchcock and Hitler during an all night drinking binge. I had no idea what was going on around me because I could only stare at the ceiling. In order for me to see, they had to tape open one eye. My eyelid muscles and my eye muscles were paralyzed too. If they had taped both eyes open, I would have seen double.
Everything hurt! My major joints felt as if they were completely hyper-extended and my feet felt as though they were being pulled barefoot over broken glass and asphalt. Occasionally, I would get strong shooting pains up-and-down my legs. It felt like electrified razor blades were shooting from my toes al the way to the top of my leg. Severe hot and cold flashes were common. I would overheat and sweat profusely. I just wanted someone to dowse me with cold water. Naturally, the salty sweat got into my eyes and burned like hell. They had a pad under me that would circulate cold water under me for these hot flashes. The problem was I would start to freeze. I could not shiver, but I was freezing. So they would cover me with blankets. I had ice-cold water underneath me and five or six blankets on top of me just to keep me sort of comfortable. This just added to the misery, and I was in unbearable inhumane pain. Nothing felt right. My body temperature was always uncomfortable and the agony was like nothing I could image was even possible. I knew death was better than this. I prayed that I would die to end this nightmare. All I wanted was for the respirator to fail. I figured that my life was over and the sooner it ended the better. It was in a state of pure torture. I was told that I would get better but, at the time, I found that hard to believe.
In my stupor, I had a face off with death. It appeared to me as a solid black monolith. It hovered over my bed. I begged death to take me. Then I dared death to take me. I really did not want to exist in this condition for a minute longer. I thought to myself, “So it’s your move death. What are you going to do? Take me you bastard! Take me! Don’t leave me like this.” Relief from this torture was just a heartbeat away. Eventually, death and I came to terms. Now was not my time to go and I would have to suffer. I am still not certain who won the argument.
My only real respite came from my girlfriend of two months, Lisa. Although we were only dating a short time, she made me feel almost normal in this totally abnormal situation. She would hold my hand and talk to me. I couldn’t talk back. (Some might say that made it a perfect relationship.) She stayed with me during my entire hospitalization, and she and her family would visit me often. My parents and her parents became good friends. They are still friends to this day.
I received some relief was from shots of Demerol every six hours. First, it worked great and I could sleep. Eventually, that effect wore off. I was awake for nearly a week- hallucinating, sleep deprived, paranoid and in constant physical and mental torment from being entirely paralyzed. The only things I could move were my eyebrows up-and-down, which meant “yes,” and my lips side-to-side, which meant “no.” I was too sick to form words with my mouth for someone to lip-read. If I wanted to say something, it had to be spelled out by the nurse: “a, b, c, d…” When the nurse got to the letter I wanted, I would lift my eyebrows. Then he or she started again, usually from the beginning of the alphabet, which I preferred. Occasionally, a nurse would say the letter I wanted. I’d lift my eyebrows. The nurse would note the letter, but he or she would not start back from the beginning of the alphabet but, rather, start the alphabet, again, where he or she left off. Suppose the letter I chose was “R”- if I needed an “A” next, I’d have to wait for the nurse to go through the remainder of the alphabet to get to “A”. That seriously pissed me off but that was my only way to communicate! Communicating like this was slow, cumbersome, and very ineffective. Can you imagine how long it took to spell out “scratch my nose”?
Some doctor told me that, “There was no documented pain with Guillain-Barre Syndrome; therefore, you might be depressed but not in pain.” Asshole! I really wanted to punch this jerk, but I could only remain motionless. Today it is known that Guillain-Barre is very painful. Unfortunately, this demonstrates how little the doctors knew about Guillain-Barre Syndrome. Their knowledge has not made great leaps forward because it is such a rare syndrome. When I had it, the doctors knew close to nothing about the syndrome. The doctors knew how to diagnose it, but their cure was to have me lay in bed, and I would slowly get better.
By the end of my first day of hospitalization, I was totally paralyzed; I had multiple I.V.’s in each arm, a urinary catheter, a respirator, a feeding tube down my nose into my stomach and a “tap” in my foot so the staff could draw blood without having to stick me with a needle. The most irksome part of it all was when the I.V. pumps’ alarms would all go off simultaneously. Being helpless, these alarms were startling; very irritating and it seemed to take the nurses decades to turn off the alarms. That first week was really rough. My Neurologist and the doctor who was the Head of Intensive Care clashed constantly. There was an experimental treatment called, “Plasmapheresis”. My parents wanted me to have it, my Neurologist wanted me to have it but the Head of Intensive Care said, “No”. Today, Plasmapheresis is the standard treatment for Guillain-Barre Syndrome. If I had it, my hospital stay would have been cut in half and my residual deficits would be less.
Very early in my hospitalization, my blood pressure shot up dangerously high. My Neurologist and the Head of Intensive Care agreed, for maybe the first and last time that a CAT scan was in order. During the scan, I thought I was lying in a drainage ditch in a local Northbrook, IL forest preserve. I thought my arms were swinging around wildly, and I had no control over them. I just kept punching the air. I could see the trees; the road and the drainage ditch and I even felt wet from the water. I thought I was waiting to be picked up by someone who would help me get away from the doctors who were trying to kill me. I was totally oblivious to the actual CAT scan, and I have no recollection of it. Afterwards, I thought I had been transferred to another hospital. I had not. I was just returned to my bed in Intensive Care. In time, I became so confused that I thought that I had been in five different hospitals. It turned out that I had developed a blood clot in my lung. I was put on a blood thinner: a dangerous necessity.
First, being paralyzed felt as if my body was surrounded in a lead case and I was not strong enough to move it. Eventually, paralysis felt as if my body was totally unattached from my brain and will. The torture of Guillain-Barre Syndrome is that your mind becomes fine and your body does not work. Being paralyzed is a completely disorienting state. I was lying in bed staring at what I thought was a door. But, if I was lying down, why was there a door in the ceiling? I thought that if I could just make it to the door, I would be well again. I swear I saw the door open and close. Although I was bedridden, I felt as if I was standing up and leaning against a wall. This would explain the door. However, it was not a door that I was looking at but a rectangular light fixture and the track which the privacy curtain was hung. To me, the curtain track was the outside of the door and the light was a window in the door. I never made it to the door.
Things actually got worse. I asked my nurse to see whether there was something in my eye. She got a washcloth and wiped out what was in my eye. She had a look on her face somewhere between “no way” and “holy shit.” It was turned over to the lab for a biopsy. It turned out to be fly larvae. While I was totally paralyzed, a fly had planted her eggs in my nose, mouth, ears and eyes. I was so sedated that I vaguely remembered a fly landing on my nose and there was nothing I could do about it anyway. I was the perfect place to lay eggs- warm, moist and motionless. I was rushed to the operating room to remove the parasites. My parents where “invited” to meet with the president of the hospital. Obviously, what had happened to me were grounds for a lawsuit. My parents assured the president that they were not going to sue the hospital and that all they wanted was for me to get better. I guess that is easier to say when you don’t have bugs coming out of you.
At the beginning of my illness, I received many get well cards- some from people that I did not even know knew me. After a week or two the cards I received became fewer and fewer. I also had visitors. The first week, no matter how hard my parents tried to prepare my visitors for what they were about to see, no one was really prepared. I had blood and cuts on my face. My hair was a mess. I smelled bad. I was attached to six machines. I had several tubes going into me. I had one eye taped open, and I was totally paralyzed. I appreciated the kindness of these friends to drive from Northbrook to Chicago just to see me. However, I didn’t want to be seen in this condition and I couldn’t talk anyway. Later, I found out that many of my friends passed out in the visitor’s lounge after seeing me. (I told you that I smelled bad!) Some people never returned, or they visited me once I was out of Intensive Care. My friend Mike, now a Police Officer, came to visit me frequently. He was made to handle really gross stuff. He always reassured me that I would get better and to hang on just a little longer.
My parents did not tell my sister, Jodi, what had happened to me because she was away at summer camp. They told her that I had pneumonia and that I would be fine. However, the Northbrook/Camp Chi (Delevan, WI) gossip mill was fully operational. She heard that I was paralyzed. In hysterics, she called my parents, and they told her, again, that I had pneumonia. She remained at camp for both sessions for a total of eight weeks time. When she came home from the camp, my parents drove her to Children’s Memorial Hospital. The first time she saw me, she started to cry at my bedside. Shortly thereafter, she fainted. She was reassured that, in time, I would get better no matter how bad I looked. My parents did not tell any of my grandparents what had happened, either. This kind of news would easily kill octogenarians. When I had improved, my parents eventually told my grandparents about the Guillain-Barre Syndrome. Two of my grandparents lived in Florida, and it was just too hard for them to fly to Chicago. My other grandmother lived in Chicago. Eventually, she would come by to visit me. She was starting to wonder why my regular phone calls to her had stopped abruptly.
Slowly, after about two weeks, I began gaining back some random muscle movements. I could open my eyes. I could form words with my mouth, and some people could lip-read what I was saying- no more spelling out the alphabet. However, because I was on a respirator, I could not make any vocal sounds. My sister was great at lip-reading. I did not want her to leave my bedside because she understood what I was saying better than anyone else. I could also lift my left shoulder off the bed a little: not very handy but a sign of improvement, nonetheless.
I had Physical Therapy everyday. The Physical Therapists were concerned that my muscles would contract in the wrong positions- feet pointed straight to the ground and my arms and hands inwardly curled. They made braces to keep my muscles properly aligned. The braces for my feet were very uncomfortable, and I hardly wore them. My feet and lower legs were incredibly sensitive. The breeze from someone walking past the foot of my bed caused intense pain in my feet. The only position that felt good was with my feet propped up on some pillows from the knees down. This made my neurologist nuts. Every time he saw me do this, he took the pillows away. I still don’t know why. It felt really good when someone would move my arms and legs back-and-forth. I wished that someone had invented a machine to keep me in a slow, regulated, constant movement. It felt so good to move!
Because I was still on a respirator, it was important to have daily “breathing treatments” whereby a Respiratory Therapist would pound on my chest with black rubber suction cups. I think this was to prevent pneumonia. This sounds painful. This felt great. I usually was asleep by the end of the treatment. This was one of the few things that let me sleep. Sleeping was a major issue. I would stay up for days because I was so uncomfortable. Another technique that helped ease the pain was to have someone pound or chop gently on my abdomen. I think that it aided digestion.
Four weeks into my illness, I gained slightly more and more movement. I could bend my left leg up towards my chest with my knee pointed to the ceiling. However, I did not have the muscle strength to put my leg back down onto the bed. A frequent request of mine was to, “please straighten my leg.” I very slowly got better and better. These were small leaps forward, but every bit counted. Over the weeks, I could lift my arms off the bed a little but I had no control over my wrists and fingers and I could move one leg a little but not my feet or toes.
The doctors tried a new approach to dealing with my pain. They put me on Tegretol. It will treat seizures, nerve pain and bipolar disorder. I had serious nerve pain. The Tegretol worked pretty well. The shooting pains nearly stopped. While I was still in much pain, this medicine helped enough that I noticed it working.
I was still on a respirator. Getting off the respirator was a crucial landmark for me being moved to a regular hospital room. I slowly began to breathe on my own. They could tell that I was breathing because the respirator was set for ten breaths per minute. The respirator measured every breath and it turned out that I was breathing two breaths per minute unassisted. When on a respirator, frequently, it felt as if I was not getting enough air; as if I was drowning and gasping for air. It was mostly psychological, but the nurses would add on a breath a minute to stop the sensation of starving for air. After two weeks on a respirator, which was inserted down my throat, the doctors had to operate to put in a tracheostomy tube. A tracheostomy tube is a 2- to 3-inch metal or plastic tube that keeps the stoma and trachea open. A tracheostomy tube dose not let air go over the vocal cords. So I could not make a sound. Some great genius had invented a tracheostomy tube that allowed air to go over the vocal cords giving one the ability to talk. Naturally, they picked me to be a guinea pig. I guess that I was the sickest one in Intensive Care so they, logically, chose me. There were a few problems. First, the hole in the neck is called a stoma. The stoma can be different sizes depending on the age and size of the patient. The experimental tracheostomy tube was larger than my stoma. Have no fear. They took out the proper fitting tube and jammed the extra large tube right in. I heard the anatomy of my throat crack and break, but they got that sucker in. We then came upon the next problem. In order for the new tracheostomy tube to work, a secondary tube had to be covered by a finger. I could only lift my arms a little bit. Covering the tube with my thumb was impossible. So someone else covered the tube. They told me to try to speak. When I did, gallons of mucus came pouring out of my mouth and nose (It sounds gross but it felt good. I had not sneezed in over a month.). After all of that, the piece of shit did not work!
It took a total of 59 days until I could breathe unassisted. They kept me in Intensive Care for a few days longer just in case I had a relapse. I was finally ready to be moved to a regular hospital room. I was probably 85% paralyzed still, but I could breathe. Also, I could eat. The entire time I was in Intensive Care, I did not eat or drink anything. I was being fed through a feeding tube. I craved an orange pop. Ironically, this is not my favorite pop but if I did not get an orange pop, a mental breakdown was surly to follow. When I was admitted to the hospital, I weighed 175 pounds. When they moved me from Intensive Care to a regular hospital room, I weighed 135 pounds. All that weight loss was from my muscles atrophying. In total, I was in Intensive Care for two months.
Being in a regular room was a treat compared to Intensive Care. I still had daily Physical Therapy, but they would take me, on a gurney that folded into a chair, to the Physical Therapy Department. I had more and more visitors because I looked more like a normal person than a sad soul who was being kept alive by machines. The pain was at a manageable level, and I did not have any I.V.’s in me. My purpose in the regular room was to wait until I was strong enough to be admitted to The Rehabilitation Institute of Chicago- one of the best rehabilitation hospitals in the country. I ate, watched too much “I Love Lucy,” had Physical Therapy, and got a thorough sponge bath everyday. It became pretty repetitive. Eventually, I could push myself up to a sitting position but I had no chance, then, of walking.
There was a two-year-old African American boy who was a long-term patient: his parents could not take care of him so he lived at the hospital. His name was Ronnie. They would take me down to play with him. He was adorable. He had a tracheostomy tube, but he was not on a respirator, and he could not walk or talk. He also has six fingers on each hand and six toes on each foot! He had an adorable little smile when I came to visit him. We did as much playing, as our disabled states would allow. Between my visits, it was regular practice to take Ronnie outside to play on a swing set. One day, a nurse turned her back on Ronnie. Ronnie’s head fell forward, and his chin covered his tracheostomy tube. He couldn’t breathe. He ended up brain-dead! I went to see him after the accident, and he was motionless. He was unresponsive. I could not believe what had happened. Eventually, Ronnie died from this trauma. The lesson I learned was not to become too attached to other patients: many of them would die. There was a boy around my age that I would play checkers with. I was pushed to his room and there was a group of crying adults. My checkers friend had died overnight. I also had a roommate who was deemed, “terminally ill” and the doctors sent him home to die. I might have been predominantly paralyzed but most people (95%) survive Guillain-Barre Syndrome. I figured that I was out of the woods. The thought never crossed my mind that I would not get better. After two months in regular care room and a grand total of four months at Children’s Memorial Hospital, I was ready to go to The Rehabilitation Institute of Chicago. I was taken to The Rehabilitation Institute of Chicago in an ambulance. Things were about to get very different for me.
The Rehabilitation Institute of Chicago
The Rehabilitation Institute of Chicago (“RIC”) was a completely different experience from that of Children’s Memorial Hospital. Every patient there was disabled but few, if any, were going to die. When I first arrived at RIC, I was put into my room which I shared with two to three other patients. I met with a rehabilitation doctor. She explained to me that when a muscle reached a certain strength, I could use it. If it was below a certain strength, I was not to use it. Using a muscle before it is strong enough can permanently damage the nerve and muscle. She said, “If you do what I tell you to do, you will walk out of here.” Ironically, this doctor was dismissed from RIC for plagiarizing on some research she claimed to have done. I quickly went under the care of a different doctor, but his message was the same. Essentially, I was told not to push myself unless a Doctor, Physical Therapist, or Occupational Therapist said it was all right to use a muscle or group of muscles. I had a motorized wheelchair so that I would not overuse my muscles. It went pretty fast, too.
A day at RIC was very structured. We were all woken up- too damn early- put in our wheelchairs, had our morning bathroom needs taken care of- faces washed, our teeth brushed, hair combed, and bowel and bladder care, etc. Then we were dressed. We were wheeled out to the dinning area on the floor, and we were fed breakfast if we could not feed ourselves. Frequently, it felt as if we were always rushing in the morning. Then the fun began. Everyday, I had Physical Therapy, Occupational Therapy, a little chat with the shrink and Aqua Therapy. It was exhausting. It does not sound like much, but going to sleep at night was no problem. There was a pool in the building filled with really warm water. This was used to loosen very stiff muscles. I really loved Aqua Therapy. My therapist was a looker, and she wore a yellow see through bathing suit- seriously! She had nothing to hide. By the end of my sessions, there were always five male staff members, just hanging around the pool- to be helpful, of course. Once I got out of the pool and lost my woody, they put me on a tilt board to put pressure on my feet so they could be stretched to a 90-degree angle. I had suffered from foot drop where my toes pointed to the ground. They had to loosen my foot and leg muscles; otherwise, I would not be able to walk. This routine continued day-in-and-day-out. Around noon, we were fed lunch, and dinner was served around 5:00 PM. Most patients needed help eating. For that matter, most patients needed help with everything. I discovered some Soul Food that would become a family staple at Thanksgiving- Sweet Potato Pie. Ms. Johnson gave my mom her family’s recipe. At Thanksgiving we still call it “Ms. Johnson’s Sweet Potato Pie.” In the evenings, we were put on a gurney or in a shower-chair and we were given a shower usually by 23-year-old, women nurses. I did not complain because I was a dirty boy. (I still am.) We were dressed, and the nights were ours. There was only one TV set on the floor. The thinking was that many patients would permanently be wheelchair bound. Therefore, these patients had to get used to socializing in their wheelchairs. They did not want patients to stay in their rooms cut off from other people. This is how they where going to stay, and they needed to get used to it. (I was told that after about two years, patients with paralysis from spinal cord injuries get used to their conditions.) More than a few arguments broke out over what garbage we were going to watch on the TV set.
The best part about RIC was on the weekend. Because I had caretakers, I could go home on Friday nights and return on Sunday nights. I had not been home in over four months. Once I was at RIC, I went home every weekend. I had to be transferred from my electric wheelchair into the car. When I got home, I was transferred into a manual wheelchair. (The electric wheelchair weighed a ton.) I slept on the first floor couch in our living room. Many people came by to visit me while I was at home. I had just enough manual dexterity to work the remote control for the TV set. Unfortunately for my father, he was in charge of my bowel and bladder needs. I was so used to people wiping me that it did not even seem abnormal. My father, with his sense of humor, would say things like, “did you eat an orange?” All the while he did this with a look on his face as though he would vomit. Some day I’ll probably return the favor.
During the weekdays, there was daily educational tutoring. I went to a few classes, and I realized that there were 17-year-olds there that could not do long division and had great difficulty reading. This was not from their illnesses. This was from really bad educations. If I went to class, I thought it was a waste of my time and more important a waste the tutor’s time. I assumed that I would go to college in a year. I tried to make a deal with the tutor. I said, “I’m wasting your time. I’m college bound. I will come to tutoring sessions if you let me help you tutor the other patients. I’ll be your aide.” The tutor turned down my offer. (I probably came off as jerk, but it was true.) I was academically ten years ahead of the other patients that were my own age. It was really pathetic. Now I know why kids get into gangs. They cannot read nor do math. They do fifth grade work- poorly- when they are 17. They have no chance of graduating from high school, and the prospects for college are laughable. What else does that leave them with? They are uneducable and unemployable. I spent the rest of my days at RIC trying not to be seen by the tutor. The other patients needed her help more than I. So I would go and hide when it was class time. Usually I’d read some porno. There was plenty of that to go around- not that I had the manual dexterity to do anything fun.
For most of my time at RIC, my roommates were Timmy and Rick. We were the same ages. Rick was a high-level quadriplegic. He dove in a river right where it said, “No Diving.” (Don’t ever do that.) He broke his neck and could not move anything below his chest. Rick was permanently disabled. Prior to his accident, Rick was a Black Belt. Nonetheless, he was still a nice person. Timmy was, generally, physically fine. He could walk, and he was discharged before Rick and me. He was in a car accident, and he was a passenger in the back seat. Despite everyone in the car being drunk, Timmy had the good sense to put on the lap belt while he was in the backseat. The car hit a railroad-crossing pole. The seatbelt broke Timmy’s back but did not cause any permanent spinal cord injury. He was very lucky and probably won a big lawsuit from Ford. (If he got any money, he probably shoved it up his nose.) Timmy was also maybe the least bright light bulb in the chandelier. His speech was kind of slow and his thoughts came just as slowly. This was not from his injury but from a tiny piece of brain enigmatically stuck into his head. As we would find out, these people do the funniest things and they surrounded us. Rick and I knew our stays at RIC would be hard work but very entertaining.
Rick and I were physically about the same level- quadriplegics. The main difference is that I would improve, and Rick would have to cope for the rest of his life in a wheelchair with adaptive devices. There was no hope of Rick improving much. Timmy could walk and use his legs, hands, and arms. He was at RIC because his feet dragged a little which was a correctable minor problem. Rick and I were lying, mostly paralyzed, in our beds. Timmy was sitting on his bed drinking a quart sized Styrofoam cup of grape juice. Timmy’s mom- a former stripper turned Born Again Christian, and therefore intrinsically a pain the ass- and Timmy were having an argument. Timmy said (say it slowly), “Mom, if you don’t shut the fuck up, I’m going to throw this grape juice at you!” Timmy’s mom said, “Timmy, I can always pray for your soul.” As she was getting down on her knees to pray, Timmy threw his massive cup of grape juice at his mom. BAM! Dead ringer… right in the head… Grape juice went everywhere: all over Timmy’s mom, all over Timmy, all over Timmy’s bed and all over the window. She ran out of the room crying and screaming something about Jesus and The Day of Judgment. We all got hysterical. After a short period, it was time for the investigation to begin. Rick and I were incapable of throwing a drink. Several nurses’ aides came into our room. The three of us were still giggling. One of the least bright nurses’ aide said, “Who threw the drink?” Hmm, this is a toughie. Was it quadriplegic 1 (Rick) or quadriplegic 2 (me) or was it Timmy- the only person in the room who could have possibly had the physical strength to throw a large cup of grape juice? The nurses’ aide said, “Well, if you will not tell me…you’ll all have to clean it up!” Rick and I looked at each other with the same look: “Is this woman retarded?” We were all quiet. No one would tell on Timmy despite how self-evident it was that he threw the grape juice. More nurses’ aides came into the room. If Rick and I were going to “help” Timmy clean up the grape juice, Rick and I had to be put into our wheelchairs. This took more nurses’ aides than was in the original investigation party. So we went from two nurses’ aides to needing four nurses’ aides. They wheeled Rick and me over to the window. On Rick’s lap, they placed paper towels. On my lap, they placed a bucket of soapy water. I put my arms around the bucket the best that I could. Then Timmy took a towel from Rick’s lap, dipped it into the bucket on my lap and started cleaning the window. The nurses’ aides, realizing we were on task, left us alone to clean up Timmy’s mess. We couldn’t believe this nonsense. Rick and I added no value to the cleanup process and this was hardly punishment. We were tables! We just had to sit there and watch Timmy work. The more Timmy cleaned; the quicker we escalated from giggling into outright laughter at the blatant stupidity of the event.
Disability knows no race, gender, or socio-economic class. On our floor, which was for pediatrics (infants to age 18), there were patients from all walks of life. It did not matter the differences between the patients. We were all disabled which was an overarching similarity. The other major difference was how people became disabled: there were rare disease like I had, failed attempted suicides, head traumas, car accidents, scuba-diving accidents, falls, motorcycle accidents, broken necks from diving where it said, “No Diving”, swimming accidents, children who ate their parents’ stash of drugs and had brain damage, and general stupidity, etc. We all had to get along because we were all in the same predicament- disabled. This commonality negated our differences. Everybody comingled without regard to gender, race or disability. The only factor that divided us was age.
The only other person on my floor with Guillain-Barre Syndrome was a Hispanic person my age named Juan. I was excited to meet him. We were about equally disabled. He was supposedly a gangbanger from Aurora. None of his gang buddies ever came to visit him. His mother only came to visit him once a month. He never talked about his father. I felt bad for him, but Juan found many ways to vent his anger from his gang members and family alimentation. Juan was a nightmare. He never let go of the gangbanger mentality, and he wanted to show everyone how tough he was- Guillain-Barre Syndrome or not. He never became aware that at RIC, you leave the gang nonsense at the door. When I first met Juan, he was in a single room that was very unusual, lying on a mattress on the floor that was also very unusual. He had no bed. He was also secured firmly to his mattress because he kept trying to jump out from the mattress to start fights to prove how tough he was. He would crawl on the ground to get to the person who angered him, which was pretty much everyone but me. Finally, he had full-time nurses’ aides in his room watching him to make sure that he did not misbehave. Juan’s behavior was counter-productive to him getting better. To recover from Guillain-Barre Syndrome, one had to take it easy. He was far too active and violent to make a smooth recovery. As expected, he was not liked by the staff, which was a big disadvantage because he counted on these people to help him with everything. Also, the other patients kept away from him. He reminded everybody that, “He was in gang in Aurora.” No one cared about this except Juan. In tutoring class, I found out that he could not read nor could he do math. He was prone to violence: the perfect low-level gang member. I’m not even sure that it was true that he was in a gang because he had no gang tattoos, and no one from his sacred gang ever came to visit him. What a nice bunch of friends.
I progressed slowly. My feet were finally at ninety degrees so I could be fitted with ankle-foot-orthoses: a plastic leg brace that supported the foot from underneath and stopped below the knee. These were needed because I had foot drop. I actually couldn’t move my foot in any direction, so the ankle-foot-orthoses kept my foot and lower leg stable and at ninety degrees. After several months, and with great help, I could walk in the parallel bars. First, it was just a few steps. Eventually, I could walk the length of the parallel bars. My manual dexterity was improving too. I was typing with what looked as though a pencil strapped to each hand. I learned to cook with adaptive devices. I scared my Occupational Therapist by typing trippy lyrics from an early Grateful Dead song.
Juan and I were progressing about the same pace. The staff asked me to talk with Juan and hang out with him more. I guess if I set an example of good behavior, he might copy my behavior. He still had a bad temper and needed to be watched closely. I did explain to him that at RIC gangs do not count. We are all sick, and we are all trying to get better. Eventually, this message might have stuck.
We had some interesting patients on our floor. There was Benny. No one knew exactly what happened to him. He fell off an elevated train station. This could have been an attempted suicide, but Benny had no recollection of the accident. He could walk, but he used the handles of a wheelchair for stability. He also had a head trauma look- his eyes were bug-eyed and slightly crossed, and his tongue stuck out of his mouth a little. He had a full-time nurses’ aide to stay with him. Her name was Joyce. Joyce was a heavyset African American woman. She took none of Benny’s crap. Frequently, we would hear Benny say, “Joyce, I love you, baby.” This was followed with Joyce telling Benny to “be quiet!” Or “Hush child!” This occurred every fifteen minutes. Benny was very confused, but his motor skills were good. Physically, he was one of the healthiest patients on the floor. He was just very confused.
The saddest patient was on my floor was Jerry. Jerry had serious Hoop Dreams. Unfortunately, Jerry got meningitis. To save his life, the doctors amputated one leg below the knee, one leg above the knee, one entire hand, and all but 1/2 of his thumb; on the other hand. This did not stop Jerry from trying to charm the women. He’d lick the stump of his thumb, pretend to brush his eyebrows and then he’d sweet talk a woman. It did not matter if it was a nurse, a doctor, another patient, or a visitor. Although he had poor outcomes, the woman found these attempts as charming. He was charismatic and funny. He was a good person with very bad luck.
We had one TV set for the entire pediatrics floor. One night, Juan and Benny got into an argument over which crappy TV show all of us would watch. (Keep in mind, Juan thought the “Electric Boogaloo” was not as good as “Breakin' 2: Electric Boogaloo” That is the kind of good taste I had to deal with.) The tension between Benny and Juan escalated. Juan took the side of his wheelchair off and started swinging it at Benny. Benny just moved out of the way. Juan, dissatisfied with his violent outburst, tried to stand up! Juan was barely walking in the parallel bars with assistance. Now he planned to stand up to get into a fistfight with a confused but able-bodied person. Benny never touched Juan. Juan stood up. Juan fell down. Out of nowhere, Jerry wheeled himself over and started counting out Juan as if it was a boxing match. When he got to “10, you’re out” the whole TV room went up for grabs. Jorge, the nurse straight from the Village People, came into the TV room. He shook with anger. Then he said in a loud, effeminate voice, “Everybody go to your room!” After the pandemonium quieted down, the whole floor went on lockdown. We were put into our nightclothes and sent to bed early. Seeing the fight was more than enough to compensate us for going to our beds without ice cream.
One night we all danced. Someone had a boom box with some very funky music playing in the hallway. Even in our wheelchairs, we moved back-and-forth and up-and-down. Some of the patients were doing wheelies and spinning around in their wheelchairs. (The ability to do a wheelie, or more precisely raises up the front wheels on a wheelchair is a necessary skill to get a wheelchair up-and-over a step such as at a crosswalk.) I was spinning around, going back-and-forth and bopping up-and-down in my electric wheelchair. Damon, one of the coolest nurses’ aides told me, “I knew you had some soul in you from your curly hair.” For once we felt like a group of normal teenagers just having fun. We were all smiling and laughing. I’m sure it was a sight to be seen.
Then there was Vince: poor Vince. He had a gunshot wound to the head. We were told that he was sleeping with a gun under his pillow, and it “accidentally” went off. Right. I saw through this story. Vince tried to commit suicide, and it didn’t work. Vince could talk, but he was bedridden. He had bad short-term memory, but he remembered the past: like the albums in his collection, where he went to school and the concerts he had seen. Frequently with head wounds, the person loses the ability to self-edit what he or she says. That means whatever he or she is thinking; he or she will just blurt it out despite how inappropriate it is. Vince was a horny bastard, and the whole floor could hear him express his feelings. With a room full of people- doctors, nurses, nurses’ aides, visitors, and HIS MOTHER- he would take out his penis and masturbate. Also, he would yell over-and-over, “I want some pussy!” One night, Vince was yelling over-and-over, “I want some pussy! Suck my dick! I want some pussy!” Outside Vince’s room, while Vince tried to pick up women, was Robert, one of the oldest nurses’ aides. He went over to one of the youngest nurses and said, “Hey Susie, Vince wants some pussy and I can’t help him out. Will you go into Vince’s room and give him some pussy?” No lawsuits were filed. Humor kept everyone going through the day and night.
My final prank at RIC did not go as planned. It was my last night there. I decided to lie on the floor by my door, put my canes out in front of me as if I fell and stuck out my tongue. I looked dead. Then I waited for hopefully for one of the younger nurses to come by, and I would yell, “boo”. As it happened, one of the oldest nurses came by first. She saw me and nearly dropped dead. No more pranks!
As for me, I was progressing nicely. After five and a half months at RIC, I could walk with two canes. I still had many residual effects from the Guillain-Barre Syndrome that would take years to correct, but I was walking. I needed a bunch of adaptive aids, a shower chair, ankle-foot-orthoses (I still wear them today but mostly for cosmetic reasons.) and a lot of help from my parents but I was ready to go home! I needed to come back regularly to RIC for outpatient therapy, but my inpatient days were over. I had lost a year of school. I graduated in 1986 instead of 1985, but I had the easiest senior year in the history of education. I got to school at 11:00 AM and parked in the handicapped spot. I had three classes, all electives, and a lunch break and I was done by 1:30 PM. They even waived gym class. Slowly, my strength improved. I needed fewer and adaptive devices. I stopped walking with canes. While I still wear ankle-foot-orthoses, most people do not notice. I use a button-hooking device, and I have some slight residual problems with my hands. Again, very few people notice.
There are many people that need to be thanked for sticking with me and helping me. Many of them have already been mentioned. I would especially like to send my love to my parents and sister- my mother was at the hospital everyday, and everybody else visited me when they could: this was frequent. I had a funny visit with a friend of mine named Deborah Lynn. Deborah Lynn and her mother Judy visited me and they bought me the perfect gift- paint books for one year olds. All you had to do was touch an area with water, and it turned the right color. I got big adaptive hand holding devices and held onto a giant paintbrush. I’d get the brush wet, and I could do a whole page in two strokes. I would like to thank my Physical Therapist, Star, for her hard work. I might have been one of the toughest cases in her career. Also, during this whole time I was dating a girl named Lisa. We started dating two months before I got sick. She never left me. She did not go to any of the high school dances though I told her it was OK. She did not date other people though I said it was OK. She stuck by me the whole time. Ironically, years later she married a man named Loren. Our parents became friends through this ordeal. I see Lisa and Loren several times a year- usually at holidays.
Like the doctor told me when I got to RIC, “If you do what I tell you to do, you will walk out of here.” I walked out of RIC!
ALL NAMES HAVE BEEN CHANGED TO PROTECT PATIENTS’ AND STAFF MEMBERS’ PRIVACY
So what is Guillain-Barre Syndrome According to the Mayo Clinic?
Guillain-Barre Syndrome is an uncommon inflammatory disorder in which your body's immune system attacks your nerves, typically causing severe weakness and numbness that usually starts in your extremities and quickly worsens. Eventually your whole body can become paralyzed, even the muscles used for breathing.
The exact cause of Guillain-Barre Syndrome is unknown, but it sometimes is triggered by a respiratory infection or the stomach flu. Luckily, this potentially deadly disorder is relatively rare, occurring worldwide in only one or two people per 100,000. All age groups can be affected, but it occurs most often in young adults and the elderly.
In its most severe form, Guillain-Barre Syndrome is a medical emergency requiring hospitalization. About 30 percent of the people who have the disorder will temporarily need the help of a machine to breathe.
There is no cure for the disorder, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover completely from even the most severe cases of Guillain-Barre Syndrome.
Signs and symptoms
Guillain-Barre Syndrome usually begins with weakness, tingling or loss of sensation starting in your feet and legs and spreading to your upper body and arms. In some people, these symptoms begin in the arms or even the face. As the disorder progresses, muscle weakness can evolve into paralysis. Other signs and symptoms may include:
• Difficulty with eye movement, facial movement, speaking, chewing or swallowing
• Severe pain in the lower back
• Difficulty with bladder control or intestinal functions
• Very slow heart rate or low blood pressure
• Difficulty breathing
Most people with Guillain-Barre Syndrome experience their most significant weakness within three weeks after symptoms begin. In some cases, signs and symptoms may progress very rapidly with complete paralysis of legs, arms and breathing muscles over the course of a few hours.
There's no cure for Guillain-Barre Syndrome. But two treatments have been shown to speed the recovery from and reduce the severity of the disorder:
• Plasmapheresis. This treatment - also known as plasma exchange - is a type of
• “blood cleansing” in which damaging antibodies are removed from your blood. Plasmapheresis consists of removing the liquid portion of your blood (plasma) and separating it from the actual blood cells. The blood cells are then put back into your body, which manufactures more plasma to make up for what was removed. It's not clear why this treatment works, but scientists believe that plasmapheresis rids plasma of certain antibodies that contribute to the immune system attack on the peripheral nerves. (This was experimental when I had Guillain-Barre Syndrome and they did not do it to me. That was a huge mistake.)
• Intravenous immunoglobulin. Immunoglobulin contains healthy antibodies from blood donors. High doses of immunoglobulin can block the damaging antibodies that may contribute to Guillain-Barre Syndrome.
Each of these treatments is equally effective. Mixing the treatments or administering one after the other is no more effective than using either method alone. Treatment with plasmapheresis or intravenous immunoglobulin shortens the time period before recovery begins by as much as 50 percent.
Often before recovery begins, caregivers may need to manually move your arms and legs to help keep your muscles flexible and strong. After recovery has begun, you will likely need Physical Therapy to help regain strength and proper movement so you'll be able to function on your own. You may need training with adaptive devices, such as a wheelchair or braces, to give you mobility and self-care skills.